His son is about 4 months old, and at 6 weeks they thought something may have been wrong with him, no/low mobilitybeing the most noticable issue. Fast forward months later, they're seeking a diagnosis through genetic testing and areawaiting official results, however the doctors have told them that they "aren't looking in any other direction" butSMA 1. I'm very unfamiliar with the disease, but that stands for "Spinal Muscular Atrophy". While I'm also not a doctor,and I didn't use Google, I can tell that's some extremely, horrible, painfully serious things when put together ina disorder.

He was at the baby-Chiropractor and his lung collapsed, and he was rushed to the ER 5 days ago, and it could very well notend well... he cited a statistic that "90% of children diagnosed die before age 2", and that there was a 1 in 3,000,000chance of getting it unless the already mutated gene is present. His son will most likely need a trach put it to live..there have been people telling him to not give up hope, there have been people telling him that it's no way to live and tolet nature take its course... he told this all to me while somehow not completely losing it. In fact, I feel like I wasmore visibly shaken because I couldn't imagine being in that position.

He was going on about it "not being a life" and I had mentioned Dr. Hawking to him.. while these conditions are COMPLETELYSEPARATE from one another, I just kind of drew a comparison between his physical capacity and the capacity of his mind,and he's clearly still conscious... which apparently there's a single toy at the top of his bed (I think.. that's what Igot from it, anyways), and it's a Stephen Hawking toy from the Simpsons, so he left with some hope for a better today andtomorrow, which I was certainly glad to see.

There are infinite facets to this situation for him, and I probably shouldn't have even gone that far in explaining them.Mostly, I'm beating around the bush because I feel strange about this, but in that link up there you can see his picture.If you have Facebook, PLEASE like the page, and share it with your friends. If you can, PLEASE donate. If you believe inany sort of God, PLEASE pray. His son, he, his wife, his whole family needs every last little bit of support they can get.Emotional, spiritual, financial.. all of it. I can't even think of being in that situation, I've been crying since heturned his back and left my house(man code, nobody can see it), and this is one of the only things I can think ofto do to help him. I've seen community support on Fark before, and I'm really really hoping that something happens here.

Again, please humor me. I'm sure there were run on sentences, rambling, spelling errors, misplaced punctuation marks..let's come back to that another day. I really just want to do SOMETHING for the family, and I can't think of muchelse besides ask for help. :-/

I think it was a recommendation by a doctor. That's not the kind of thing they would do unless it was suggested by somebody "official". I'm sketchy on that detail,. but I'm pretty sure that's what it amounted to. For all I know it could have been an "Infant Muscular Relaxation Specialist".. who knows.

As someone who cared for a husband with Lou Gherig's they are in my thoughts and prayers. SMA and PMA and ALS are good comparisons (each depending on where the motor neurons are affected most). It's horrific. There is a coach on one of the collegic teams who's son has had it for 20? Years? (Questions marks as it may be 18 and I can't remember which team it is - just saw the story before one of the games). It is truly horrific.

Wow, I cannot imagine. So sorry subby and for your friends. The grief, the worry, the sadness has to be so intense. Imagining the baby's suffering and being so helpless. I assure you they have as many positive thoughts, my version of prayer, and just outright love that I can give them. And as soon as I am able, I will be absolutely happy to make a donation. Please update some in TFD.

SMA is a horror. Don't youtube it. Basically, as your muscles no longer get any signals, your body dissolves them, and I'm not exaggerating. Just another reason we should toss money into understanding our own damn bodies.

Alright, I'm going to be *that* guy because I just went through his with a family member. Prayer, although they make you feel good, does absolutely nothing to help someone who needs serious help. Education is key, not religion:

http://www.fsma.org/research/stemcells/

This is exactly the type of thing that can be prevented if we stopped the prayers and let the scientists do their research without them being accused of interfering with God's plan.

Infinite Monkeys In Front Of A Computer:Alright, I'm going to be *that* guy because I just went through his with a family member. Prayer, although they make you feel good, does absolutely nothing to help someone who needs serious help. Education is key, not religion:

http://www.fsma.org/research/stemcells/

This is exactly the type of thing that can be prevented if we stopped the prayers and let the scientists do their research without them being accused of interfering with God's plan.

These posts quite literally send me for the whiskey bottle. I can only vaguely imagine my little girl being in this position.It makes this very tough and strong man weep. And not the little boo-hoo, but the shoulders shaking, face-in-hands, tears-running-down-arms crying.I try so hard to keep perspective in these matters, but all I can think is "this poor little human has just been dealt the crappiest hand ever, a serious health problem".

I have no words of comfort. I will list in for remote work tomorrow so I can donate. My saturday off is not as important as this.

Witty Comment, they are lucky to have a friend like you, who cares so much and is so empathetic.

Bless you for being who you are for them. The parents need you more than their child does. Listen, hug them, be a quiet strength and someone they can cry with. They will be fine, because they have no choice but to take one day and a time and keep living. Just keep being that friend for them. That's what they need more than anything.

So sad, but I do not do FB for any reason. I am also a huge believer in letting nature take its course. I just can't see putting anybody through the pain of a seriously debilitating disease just so I can feel better.

How very sad to hear for someone so tiny to go through that. The only suggestion I have is possibly mention Jason Becker's life story. He's had ALS for a very long time now but still manages to communicate and accomplish amazing things. Perhaps that might give a little hope.

I'm a pediatric nurse, and I've cared for babies with SMA1. It really is heartbreaking, and DNR is what I'd suggest. His life could be prolonged with a Gtube and a trach, but it is really such an awful disease. I'm sorry for you and your friend.

Aces and Eights:Witty Comment, they are lucky to have a friend like you, who cares so much and is so empathetic.

Bless you for being who you are for them. The parents need you more than their child does. Listen, hug them, be a quiet strength and someone they can cry with. They will be fine, because they have no choice but to take one day and a time and keep living. Just keep being that friend for them. That's what they need more than anything.

If I wasn't on my phone right now I would mark you as a a good person.